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Barb's struggle with PV
I was diagnosed with Polycythemia Vera, six years ago. It is not a curable cancer, but is controlled by chemotherapy meds. It's a type of blood cancer, where the bone marrow produces too many red blood cells, and platelets are elevated.
People without PV, usually have platelet levels between 200-400 which is normal. People with PV, can have platelet levels of 600-1 million or even higher. Mine have been up to one million, and their highest. After I was diagnosed, I started out with just phlebotomies (the removal of one pint of blood), every two week. This is to remove platelets from the blood.
As time progressed, phlebotomies were no longer working, and I had to go on chemotherapy medication, as that is the only other thing that will control the platelets. I went on anegralyn, which I soon found, was not for me. I have been on hydrea, another chemo drug, for the last five years. The side effects of this drug are nausea, fatigue, itchy skin, minimal hair loss.
PV can also contribute to strokes and heart attacks. Since my diagnosis, I have had three strokes, called TIA's. I have recovered from them, as they only last a few minutes, but the long term effects they have had on me is memory loss and lack of concentration. I hope this info is helpful to anyone who has just been diagnosed. Feel free to contact me at barbschellenberg@hotmail.com and I also have a blog; www.gimmechocolate.blogspot.com where I often share of my struggles and frustrations with PV.
People without PV, usually have platelet levels between 200-400 which is normal. People with PV, can have platelet levels of 600-1 million or even higher. Mine have been up to one million, and their highest. After I was diagnosed, I started out with just phlebotomies (the removal of one pint of blood), every two week. This is to remove platelets from the blood.
As time progressed, phlebotomies were no longer working, and I had to go on chemotherapy medication, as that is the only other thing that will control the platelets. I went on anegralyn, which I soon found, was not for me. I have been on hydrea, another chemo drug, for the last five years. The side effects of this drug are nausea, fatigue, itchy skin, minimal hair loss.
PV can also contribute to strokes and heart attacks. Since my diagnosis, I have had three strokes, called TIA's. I have recovered from them, as they only last a few minutes, but the long term effects they have had on me is memory loss and lack of concentration. I hope this info is helpful to anyone who has just been diagnosed. Feel free to contact me at barbschellenberg@hotmail.com and I also have a blog; www.gimmechocolate.blogspot.com where I often share of my struggles and frustrations with PV.
Louise |
Latest page update: made by Louise
, Mar 17 2006, 11:57 AM EST
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| Started By | Thread Subject | Replies | Last Post | ||
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| Anonymous | Barb's Struggle with PV | 1 | Nov 20 2006, 11:55 AM EST by Louise | ||
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Thread started: Nov 20 2006, 10:25 AM EST
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PV is not a cancer, because it is not metastatic - it can not spread to other parts of your body. TIA's are not strokes, but they can indicate you are at risk for stroke. Hydrea does not cause the itchy skin, PV causes the itchy skin.
Chemotherapy is not the only treatment option for PV. Interferon is a treatment option and it is not chemotherapy. Please do not post unless you have accurate information to provide. |
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